Turned the corner and headed home!

Good news.  We are home!  Shortly after the previous post, the nurses eased off the heavy duty pain medications and went to using just tylenol with codeine.  That made a big difference in Miles.  He sort of came out of his "fog" and started smiling at us and trying to play with toys.  We call that "turning the corner".  :)  What a relief that was!  On day 2 after surgery he still had minimal swelling, of which everyone was impressed.  The nurses couldn't believe it.  They slowly removed more IV lines from his arms, but they still had to keep the drain in which came from his head, and they still had to monitor his vitals.  Later that day, a resident from the plastic surgery team came in and told us our surgeon said to take the bandages off, take the drain out, and that we could go home.  We were shocked.  Happy, but shocked, and not quite ready for it.  We watched as the doctor removed the bandages.  We were happy to see that the incisions looked pretty much how we thought they would, although to people who don't know what to expect, they do look large and scary.  (I will not post pictures of those incase any of you have weak stomachs).  :)  We could not watch while he took the drain out, but Miles handled it like a champ; one big cry and then it was over.  So although we were happy to have all that done and happy that they said we could go home, we did not feel comfortable just yet to care for him and his incisions on our own.  We requested to stay until the next morning, which they said was no problem.  So that night they moved us out of the PICU and into a step-down room. 

Throughout that night and morning, things just got better.  Miles was playing more, eating a little more, and we were holding him more.  He was also down to just regular tylenol for pain control.  By the next morning, we were confident and ready to go home.  Now that we are home, Miles is great.  He is smiling, and playing with his toys; he is eating better and resting better.  Our focus now is keeping his wounds clean and infection-free and keeping him safe from his big brother.  :)  We will appreciate your continued prayers for that.  Our follow up appointment is September 5 and then we will get his helmet shortly after that.  Here are some pictures of Miles' recovery:
 

Finally out of the "fog".

Sitting with Mommy.

Bandages already falling off, hanging with Daddy.

After bandages removed, with our friend Colleen, who came to visit us a lot and helped keep us sane.  :)

On our way home, happy to see the light of day.

Slowly but surely.

Before surgery in his cute little gown. :)

A few hours after surgery.

Holding Daddy's hand.

Well, Miles has been a real trooper.  The doctors all say he is doing great.  So far, he has minimal swelling, although they say it is usually the worst on day 2, which is tomorrow.  The nurses have kept him on pain meds around the clock so he feels minimal discomfort.  He has been eating a couple ounces of breast milk every couple hours, which is great!  And the next time he is ready to eat they said I could hold him and nurse him, which will be our first time holding him since before the surgery.  I see tears in my future (happy tears).  :)  They were able to take out his catheter and one of his IV lines.  He still has two IV lines and a couple heart rate and respiration monitors hooked to him, but we are thankful each time something is removed.  He had a CT scan earlier today and the neurosurgeon said it looked great with no bleeding around the brain, which is an answer to our prayers.  The cranial surgeon told us that he hopes we can go home tomorrow, but Nick and I are in no hurry.  Although we would love to be in the comfort of our own home and with our other son, Maxon, we are a bit  scared to bring him home and care for him on our own.  :)  I just want him to be a little more himself first. 

So anyway, all is good overall and we are encouraged by how well he is doing.  Now we just wait for the healing process to progress and for things (IVs, bandages, monitors, etc) to slowly be removed.  And we are still waiting on that first smile from him too.  :)  We pray that is soon. 

Recovery

Miles is out of surgery and in the recovery area. We are sitting next to him and he is doing well. He is still sleeping from the anesthesia but did open his eyes a couple times when we were talking to him. The surgeons and nurses said that everything went well during the surgery and that he is doing great. In a little while we will be transported to the pediatric ICU where Miles will stay for a couple days. We will post more as he recovers.

It has been a long day and I'm sure it may be a long night. But, we have felt amazing peace all day and have really felt God's presence here. We also thank God for our assistant pastor and his wife, who are also friends of ours. They came to be with us while waiting for the surgery and helped us pass the time and pray for Miles. God knew that we needed a distraction today!

Scheduled for surgery

Maxon and Miles

Okay if you look at this post and the previous post, there is quite a gap!  Sorry about that; I guess life got busy for us for a while. Anyway, we are doing well, still live in Florida, and now have 2 children. We have our 2 1/2 year old son, Maxon, and our 5 month old son, Miles. It is definitely fun to have two little boys in the house. We are loving it!  And now, here is what is going on most recently:

Our 5 month old, Miles, was born a happy, healthy, and big boy at 8 lbs 12 oz.  Ever since he was born we have noticed that his head was slightly long and narrow. At his 1 and 2 month appointments we asked the pediatrician about it. He told us since his head was symmetrical, just to watch it and it should round out. Just after the 2 month appointment, I took Miles to our chiropractor who mentioned that they would need to monitor his skull shape because some kids who have that long, narrow skull pattern need to have surgery. So we took him each week to the chiropractor for cranio-occipital manipulations. At about 12 weeks the chiropractor mentioned that his head wasn't changing like it should but to give it another month. I went home from that appointment and did some research on the type of surgery for craniosynostosis, which was the skull pattern the chiropractor mentioned. I read that there are 2 different surgeries to treat this, the open procedure or the endoscopic procedure. The endoscopic procedure is only appropriate if the child is under 6 months old. So, after reading that and definitely preferring the endoscopic procedure versus the open, I had Miles to the pediatrician the next day. And from then on, it just got crazy.

The doctor gave us a referral to a craniofacial specialist in Fort Lauderdale. The specialist ordered a CT scan which confirmed the diagnosis of sagittal craniosynostosis. This a condition where the space between the skull bones that runs down the middle is Miles' head, is already fused. Left this way, Miles' brain would not be able to expand correctly as it grows, possibly causing developmental, vision, or hearing issues. The only way to correct this is surgery to remove the part of the skull that is fused and then helmet therapy following the surgery to help the bones shape correctly as he grows. After the craniofacial/pediatric plastic surgeon read the CT scan results, he told us surgery would be necessary and that Miles would be a good candidate for the endoscopic procedure.  So... Fast forward 5-6 weeks and here we are.  That is what we will be doing on Thursday, August 23.

The surgery is going to be done at Joe Demaggio Children's Hospital in Hollywood, FL and Miles should be in the hospital for 3-5 days. We have been through a lot of different emotions the past couple months and have been busy with a lot of doctors appointments. We are thankful that the surgery is finally here so we can get this fixed but are obviously a little nervous. Above all, we know that God is in this situation and no matter what happens he will watch over all of us. We have had a lot of prayers for us lately and have felt an incredible peace so far. We are planning to use this blog to keep family and friends posted on Miles' status as the surgery is completed and as he recovers. Please keep Miles in your prayers; we greatly appreciate it!

Miles

Maxon